From bedbound to walking rehab

[billysboy]

Briefly my Dad was operated on for cancer in January and it was very touch and go
He has come out of Hospital with three grade 3 bedsores on his sacrum and on the bottom of two heels which has meant he has been in bed to aid recovery
The sacrum is healing nicely but the heels are being more obstinate he is 80 years old
My query is given that he has been in bed for six months he has huge muscle wastage and I am wondering what sort of timescale I could expect for him to be walking if at all

I know there are a lot of variables but I am just asking if anyone else has experience of this

I have

My physio said you lose 3% muscle a day being bedbound, I was bedbound, in intensive care, paralysed, for 3 months. I recovered relatively quickly at a special rehab hospital, 2 months to walking with a crutch, but I was young, it is bloody tough and I still feel insecure/dizzy now when I am outside, 2 1/2 years on. I had the fact I was 45 on my side and also I HAD to get home for my daughter.

Motivation is key.

They start you on a sort of plank to get your body used to being upright, then a cage thing so you cam swing your legs back and forwards on a hoist to build muscle.

I had something called 'Guillain Barre' though, which is temporary total paralysis and very frightening and extreme. I could not even breathe! Your father should hopefully not be this bad.

Loads of encouragement and he WILL get better. It is just a huge effort. I would imagine it'll take a year. Lots of protein, eggs etc to build muscle. I was given those disgusting protein drinks 3 times a day. They are the same as having a steak apparently.

I don't think I'll ever be the same again, for example, I still can't run.

Good luck and best wishes

Oh, I also had bedsores on my feet. They healed quite quickly, you have to be careful with feet. Try to get the blood moving, move his legs often.

The bedsores on his heels are the worst part about it as it has to be a balance of getting him moving and keeping weight off his heels
I am getting him a recumbent exercise bike hoping he will be able to use this
The nursing home have been brilliant but it will be no good healing the sores for him still to be bedbound

Dad is already on a high protein diet and has gone from 8 stone at discharge to 11stone 4 months later

He is on the fortisip protein drinks amongst other things

Great idea about the exercise bike. Another thing you could do, is in a couple of months when a bit more mobile, go swimming. For some reason you may find he can walk in water! I could. I think there is no fear of falling, the water takes your weight, yet the resistance builds up muscles like nothing else.

You also feel happy as you feel normal! Do a few simple exercises in the water too if you can. I was told to stand on tip toes a lot. Walk 50 paces on tip toes for calf muscles. This avoids his heel issue! Blood flow to the sores is key.

Sounds like you are doing everything right.

Me as well

I have 4 neurological conditions but 2 are feeding off each other and are both refractory. I have been first in full paralysis with severe spinal pain which lead me to an admission to hospital as different than my usual which I can deal with at home on 7th May, I came home by ambulance on 16th May and the 2 ambulance men put me into bed, due to a massive mess up with physio referrals and other key staff going off sick I am still in exact same spot.

In general terms for me, it was a flare that knocked me as 80% of the time I am generally bedbound (that has been going on over the last 7 years the 1st 2 years had remissions but lucky to get a days let up now) as while I have now managed to transfer to commode (a meter to and fro) i cant stand for more than 2 seconds due to give way weakness. I was 35 when these 2 main conditions floored me in 2011.

I currently go between 2 crutches (on really good days), zimmer frame (around the house), rollator with a seat (if out of the house and short distance, like dropped at the front door of GP surgery where it is less than 10m to GP room and same on way back out) and manual wheelchair. The OT has placed an order for a power chair as well. However it's all over my records that appointments may have to be cancelled at short notice as im bedbound again,

Things that have helped me but discuss with your dad if he wants to try these and work with it. If he is able to sit up even 5 mins and try and work his legs or his arms with one of these placed on the floor or table. It will help retain muscle and stop wastage. Here are 3 suggestions and take up less room than a full bike and easier to use,

www.ebay.co.uk/itm/Exercise-Bikes-Digital-Pedal-Arm-Leg-Aid-Mini-Folding-Fitness-Mobility-exerciser/112653730187?epid=25010216621&hash=item1a3aaf818b:g:0m4AAOSwwYpauLw0

www.ebay.co.uk/itm/Exercise-Bike-Arm-Leg-Resistance-Mini-Cycle-Pedal-Exerciser-Workout-Seat-Fitness/263678336561?hash=item3d64741e31%3Am%3AmhL_yNd6y-P0Tyr8g8ckdVg&var=562809913186

www.ebay.co.uk/itm/Armchair-HD-Pedal-Exerciser-Arms-Leg-Restore-Muscle-Strength-Blood-Circulation/152142886645?epid=1744868382&hash=item236c6c36f5:g:jQ4AAOSwQ~ha1zr8

Yes to lots of protein, also coming into winter maybe milky ovaltine in evening as well as its well enhanced with vitamins and comforting. Complan comes in various flavours to be made with milk Strawberry, chocolate, original, vanilla and Banana.

Also as he is 80, if you look over on Carers UK forum and you as daughter are like a "carer" as its different to relationship of previously, there is a lot who have changed their tack with their caree (esp where older) and instead of getting them to take normal food as long as their swallow is OK,

as @WendyCope says the protein drinks are actually disgusting and im not 100% from your post or not but if he is at home, with carers coming in or has had a stay in nursing home or is still in nursing home. If you think he might eat what is nicely termed "nursery food" the same type of stuff like a child as its more important to enjoy the food when ill and immobile and as long as holding the weight, bits of whatever he fancies might be nice. Rather than necessarily vegetables etc and what is meant to be good for him as enjoyment is key.

Raising his feet, if in a hospital bed, i find it helpful to put a memory foam pillow at the bottom and feet are up on that. My feet are currently on mine, the "knees" of the bed raised under mine to keep them level for me, I tend to use different colour pillowcases on the memory foam pillow so can tell at a glance which one needs to be at bottom of the bed.

There is also passive physio exercises for movement which is where you (i mean as in another person not specifically you) are moving his limbs for him instead of him doing it all by himself, it also allows for massage of the sore muscles. Unscented body lotion can be good for massage,

Theis is just from my own current experience, the district nurse advised me to use dermol as lotion, I get it on prescription on recommendation of district nurses.

www.ebay.co.uk/itm/WOOL-PILE-HEEL-PROTECTORS-PRESSURE-CARE-WOOLPILE-DISABILITY-AND-MOBILITY-AIDS/281209052762?epid=1551020775&hash=item41795d9e5a:g:KggAAOxypNtSiIlf

Thats a pair of lambswool heal protectors which do protect them and let them heal, in the meantime can also still use feet on one of those pedal exercisers like a mini bike

If you are co-ordinating things and have others helping you, can i suggest Jointly app, its available from Carers UK (I dont work for them honestly), to buy the app so you can build your circle around your caree and add tasks and notes etc, there is a one off cost of 2.99 - there is also a 14 day free trial to see if it suits you and helps you, you can invite other family / helpers / relevant people to the "Circle"

for both of you, @billysboy its horrible seeing your dad ill and @WendyCope, you are a true survivor, you have fought GBS and came through

@WendyCope Glad you got proper rehab as there wasnt a suitable facility so I ended up being put into a nursing home, I had 5 stays across 2 years, the last 2 was in the nicest home and im glad cos they were the longest in both cases, 5 and 16 weeks respectively and across all 5 stays each time I was given a room in whatever area they had space in as i was short stay, every single time I ended up on the dementia units. Kept things interesting to say the least.

smurfy Thanks! I was in a stroke rehab hospital. All older people. I had polyneuropathy as well, grim days. Strength to you . I think I have permanent nerve damage.

Yes, yes to the terrible muscle pain when you can't move! Nothing compares.

You are so young to be affected like this. Stay positive, I am actually very nervous to leave the house in the heat atm in case I fall over! I cling on to DD's hand very tightly.

Really hope you feel better soon. to all.

smurfy 2015

many thanks for sharing your experience and suggestions

Dad is in a private nursing home and has a private physio go in once a week
He has an air matress and also an electric air cushion for his wheelchair which I thought would work in the recumbent exercise bike
He is able to feed himself ok and has a stoma and catheter

I am just mindful of how realistic it will be to get him up and about

As he is in a nursing home they will have hospital type beds, they should be able to tip to a semi-standing position. The bed will probably be similar to this. www.completecareshop.co.uk/beds-and-bedding/profiling-beds/community-bed like @WendyCope says "Walk 50 paces on tip toes for calf muscles. This avoids his heel issue! Blood flow to the sores is key" if he is in the bed, he can do this in short bursts of 5 or 10,

The bed if its the like the one in the link, I know that one best as its the one I am lying in at home right now, can be put into a position called the Reverse Trendelenburg as its only for a couple of mins there is no major pressure on the feet and the weight is being put on the ball of the foot or tiptoes, discuss with physio as an idea as it would be for a 1-2 mins at a time and would only be at a slight slant so he is kinda onto the balls of his feet or tiptoes so avoiding the heels and can do a small walk in the bed and on footboard/pillow and back to normal position.

Sorry, the only real picture I could find of Reverse Trendelenburg was an operating table with a large tilt but it gives a general idea.

I would recommend doing this after he has had a chance to build up a bit with pedalling / muscle massage/physio visits/carers doing passive physio with him as well to keep blood flow going, muscle massage esp of the legs they can be mega painful with wastage.

The carers will need guidance from physio before any of them can take it on, so would recommend asking the physio to do a printout for them using whatever programme they usually use, if they know to do this before they do next call with current exercises that could be helpful. They may have to do a "form" for the nursing home for the staff to help to cover everyone.

Go for the bike by all means but I would say try the smaller scale first to see how he gets on and it can be used on arms and legs, he would be sitting in the chair with it on the floor for legs and on a table in front of him for arms. Its also cheaper, easier to store and if wants to progress to the bike you know it will be in good use, otherwise it could be taking up room only and end up as an expensive clothes horse. www.completecareshop.co.uk/physiotherapy-aids/exercise-machines-and-equipment/digital-display-pedal-exerciser This one has different settings and records times and resistances.

Just suggestions and thoughts

Are his legs in gutter cushions to float his heels? If not ask for them to be provided. They are standard use for pressure sores on heels. Other than that you've had some excellent advice on here

@Imnotaslimjim is that the ones that can alternate with air moving up and down?, I didnt actually know the name of them if so and ive had them so many times.

At the risk of sounding a bit glum, an 80 yr old that's still bed bound 6 months after (? emergency) surgery and still has pressure sores is going to struggle to get properly ambulant again. It's good that he's managed to put some weight on & physio once a week is nice (but probably not enough to achieve much). It's not impossible, but it's going to be an uphill battle (and is a very different situation to younger people rehabilitating).

I did think once a week physio was not enough... I had every day. 3 hours. But, I couldn't even feed myself to start with and my arms were completely locked upright, I couldn't move them into a straight position even and had braces on hands and feet, so a bit more drastic.

Walkingthroughawall

It will be very tough and I am of a mind that we are not going to be able to rewind the clock
These sores could still take months to heal if at all , I am trying to find some sense of how this will pan out but it is very difficult to get a realistic answer from staff who are trying to be really positive with both me and Dad and I have not been in this position before

I just feel if I dont get him on his feet soon I never will so I am trying to find something to help which is not detrimental to his sores and to feel the water to see what his prospects are

I have sought guidance from the TVN at the hospital as well as the sister at the nursing home and an expert witness who helped write the NICE guidelines on pressure sores

The longer he doesnt use his legs the worse they will become

Thanks for the replies everyone

@WendyCope that's why I was thinking passive physio in between the actual physio might help as well.

During my May hospitalisation, after the first 3-4 days and we had ruled out the worst, I fought back as I'm sure you did to start feeding yourself, I was worse than a toddler, it went everywhere.

The staff cut stuff up for me on request but knew not to step in until I requested as I've been in that position many times and knew it better than they did for me.

However I was still eating lunch one day when tea was served, then I ugly cried. Lunch was 12.15 and tea came up at 5,30pm (i had chosen a salad for lunch) one of the nurses came and sat bedside and pulled the curtain around so I could cry and offered to feed me, I felt defeated but willingly accepted as I was hungry, angry, in pain, frustrated and really fed up. I had hot food for tea and had seconds, another of the nurses asked the colleague who was with me if wanted anything in shop as was going to break, behind the curtain with 2 nurses for a moment they got my emergency fiver and one of them accepted it as it was being done in front of witnesses as they got me a couple of things in shop, sweet stuff, no more hangry me and happier.

I had tried to my very best, the nurse who rescued and fed me tea woke me up the next morning with a grin and 2 bowls of cereal - 1 for me to try and feed myself and second she was about to help me with

My legs can hold me for a couple of secs now but I've had a fall this morning which has. knocked me confidence wise and still shaking

smurfy your experience is exactly the same as mine re eating except I had a handy bib!

Please don't feel down about falling, I know about that too, and about how shaky and confidence knocking it is. I fell down outside the supermarket 3 weeks ago and it has TOTALLY knocked my confidence to leave the house. (Doesn't help that I live in a very hot place in summer)

Don't you think though, that once you have achieved the 'holy grail' of being able to stand, it will start getting better for you gradually? I remember the first time I managed to stand (after 5 months in bed), I cried, really sobbed!

Do you put weights on your legs for gentle leg lift exercise?